Ironically, putting myself completely out there with my blog and how I’m dealing with ALS is in a way preserving my privacy, something I cherish. I also believe it’s kept my loved ones informed about a lot of things without worrying about how to ask me a question, worrying if it will upset me. I think this is especially so, since I don’t look like I’m on my death bed right now.
Death and dying aren’t easy topics to discuss for most people even when it’s staring them in the face and they have this intense need to know or express something. I completely understand because I’ve always had a hard time expressing myself when someone I care about is in the midst of dealing with a death. It’s a taboo topic that needs to be brought out to mainstream conversation. I’ve heard people regretting that they didn’t express something they wanted a dead loved one to know, including myself, but I’ve never heard anyone regret sharing their feelings and speaking openly with someone at the end of their life.
Right now I need a lot of help and it’s obvious something is wrong, but death? It’s too early for most right now, almost like they feel it would be an insult. Not many have seen me at home in my little ALS headquarters, I jokingly call it, with me unprepared for their visit. Only Tony has seen the absolute worse and me dying is still hard for him to grasp at times. It wouldn’t bother me at all for someone to ask me, but I realize how uncomfortable it is for them. They need more time to process that the losses will continue. ALS will continue until it kills me.
I am thinking and learning about life prolonging, and end of life options. No, not all day every day but there is a part of me constantly preparing. Preparing for the next blow from ALS, and the next hurdle to overcome. For me it’s not much of a choice because I’m feeling changes before they’re apparent to others. My private nature is well known by my loved ones and I think that’s one reason we don’t talk much about it, but I think the main reason is they need more time.
I believe all my loved ones and I are being helped by this blog. I’m able to express my feelings and fears which has turned out to be a great stress reliever for me. They are able to stay informed on what I’m feeling and dealing with. This doesn’t mean all of my posts are easy to publish, they’re not, I always have them and their feelings on my mind. Many days I’ve struggled with whether or not to publish what I’ve written. I have stuck to my word about saying what I feel when I want to. What I thought might be a little selfish has proven to be helpful. I’m happy and proud of that. So during the times we spend together we talk about other things. Right now it’s working great for us all. ALS of course is brought up at times, but everyone pretty much knows where I am at.
I know the time will come when very hard things will need to be discussed. I do wish speaking of death and dying wasn’t so taboo. It can make things much worse in the end. It’s a topic that needs to be brought to mainstream conversation without such discomfort when a person is dying. I think my blog is helping this happen for me and I’m so glad I chose to do it.
This is just something I wanted to express to all my readers and really to my loved ones. I thank you all. I know many people have died with many things left unsaid even though they had time. Hopefully a day will come when it’s common to openly discuss it at the appropriate times. Dying shouldn’t be taboo, everyone does it.
This was written faster than usual. I just wrote what I’m thinking as it came. I do realize all deaths aren’t the same. Some are sudden and with no opportunity to express deep feelings. I’m not about to sit here and say you should have been expressing your deep feelings everyday in case of a sudden death. I’m discussing my death, and the death of anyone dying from a terminal illness.
My last couple of posts have been death oriented. I’ll hopefully have something a little lighter next time. I have to let my thoughts lead the way though.
Until next time, take care,
This article was written by April